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Disability Facilities Grant

Hellbaby

Hi, I'm new! Bit of background- my 3yo dd is awaiting diagnosis (appointment in December) but paed is certain that she is on the spectrum, she has no language, very little social interraction and no imaginative play. She has 1-1 support at nursery and recieves Higher Rate DLA. We were advised by the Clinical Psych to apply for the DFG as she has severe sleep issues and we desperately need another bedroom. She shares with her baby brother at the moment but most nights I sleep with her in the lounge as she keeps everyone else awake.

Anyhoo, I was sent the Self-Referral form by Social Services, but it seemed to be aimed at adults with physical disabilities- I filled it in as best I could and included a strong letter of support fom the pych. I got a call from a lady at Children's Services today saying that the OT wouldn't even do an assessment as we don't fit the criteria, ie, she doesn't have a physical disability Yell Everything I have heard/read about this grant says that it is available to anyone with a disability and I'm really not happy about her needs being dismissed like this. We're in Norfolk and the Psych told me she knew another family in the area with similar issues who got the grant.

Any suggestions what to do next? Thanks for reading Smile

Parents

  • hi hellbaby

                   We are currently going through pretty much the same thing here, my boys share a room one dignosed asc one under assesment, after what seems a lifetime of strougling we have established a reasonable sleep routine for my son who is diagnosed, however my younger son who is under assesment is yet to sleep through the night and shares a room with his brother. like you we too spend nights sleeping in the living room with him as he disturbes my other children who are sleeping. My daughter who is also dignosed asc used to walk the house for hours at night . understandably we dont want their routine altered so put up with night after night on the couch trying not to let my youngest son disturb them. i really feel for you, i know how hard this is for you. We too looked at the disability facilities grant but came to pretty much the same conclusion as you, its all geared up for physical disability and dissmisses the needs of famiies like us.  A room of their own for the child  makes  a massive difference to not only the child but the entire family. We paid ourselves for an extension built onto our home for my daughter to have her own room and it really did help but this is extremley expensive and no way can foot the bill again. i know this dosnt really help you with what to do next i really wish i knew, just wanted you to know there are others going through the same thing just as frustrated with the system as you are, good luck!

     

Reply

  • hi hellbaby

                   We are currently going through pretty much the same thing here, my boys share a room one dignosed asc one under assesment, after what seems a lifetime of strougling we have established a reasonable sleep routine for my son who is diagnosed, however my younger son who is under assesment is yet to sleep through the night and shares a room with his brother. like you we too spend nights sleeping in the living room with him as he disturbes my other children who are sleeping. My daughter who is also dignosed asc used to walk the house for hours at night . understandably we dont want their routine altered so put up with night after night on the couch trying not to let my youngest son disturb them. i really feel for you, i know how hard this is for you. We too looked at the disability facilities grant but came to pretty much the same conclusion as you, its all geared up for physical disability and dissmisses the needs of famiies like us.  A room of their own for the child  makes  a massive difference to not only the child but the entire family. We paid ourselves for an extension built onto our home for my daughter to have her own room and it really did help but this is extremley expensive and no way can foot the bill again. i know this dosnt really help you with what to do next i really wish i knew, just wanted you to know there are others going through the same thing just as frustrated with the system as you are, good luck!

     

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